PEM – or Bed Now Please

Having just started to come out of a bad incidence of PEM I realised it’s something I’ve not specifically posted about. Yet it’s been a huge part of my life for over three years. So I’m going to try to explain in personal terms just how incredibly debilitating it is. A little background is probably necessary.

According to the NIH* “Post-Exertional Malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS).

A cardinal symptom is one that must be experienced by the patient to confirm diagnosis of the condition, in this case ME. Although my official diagnosis of ME wasn’t confirmed until about eighteen months ago, my GP and I are both in agreement that this has been ongoing for me since the time of my original RA diagnosis.

So, what exactly is it? And how does it differ from the fatigue experienced by patients with RA or other autoimmune conditions?

The NIH* states that “Unlike generalized fatigue, PEM is much more profound and reduces daily functioning. This symptom is characterized by a delay in the recovery of muscle strength after exertion, so it can cause patients to be bedridden for multiple consecutive days.”

And this is exactly what I’ve just been through. More recent studies into PEM recognise that the earlier criteria of ‘exercise’ was misleading and led to confusion amongst patients affecting diagnosis, ‘exertion’ is now used to provide a clearer picture, and it’s recognised that this can be mental or physical exertion, and that the physical exertion has a much lower baseline than in the standard population, as patients with ME are rarely able to exercise.

So we know PEM is profound and reduces daily functioning. But what does that look like? And how does it feel in real patient terms?

The NIH* describes it as “a worsening of ME/CFS, ME and CFS symptoms including fatigue, headaches, muscle aches, cognitive deficits, insomnia, and swollen lymph nodes. It can occur after even the simplest everyday tasks, such as walking, showering, or having a conversation.”

Seriously? Showering? Having a conversation? Actually yes, and in my experience having conversations, chatting, talking, call it what you will is incredibly draining. That doesn’t mean it can’t be enjoyed, but it does mean I’ll often pay for it later.

I’ll try and describe as clearly as I can how I was affected this weekend. I came home Sunday evening from visiting my Dad, which involves more driving than I would usually do. I want to make it clear here that I’m not blaming you Dad!! ❤️ Going to Waitrose or even popping out for lunch can have exactly the same effect. That’s the point. It doesn’t take much. And it doesn’t have to be physical. Dealing with simple paperwork for a short time can do the same thing.

So, Sunday afternoon. The first sign for me is usually yawning. Before I had ME I never thought of yawning as being a physical thing, but this can drop me to my knees. It’s like my whole body yawns with me. A couple of friends in my regular social circle will spot this a mile off now, and they’ll simply say ‘time to go home’. Apparently I suddenly look exhausted. Always attractive!

I’d say that on average within twenty minutes of this yawning starting I’ll be asleep, there is no choice, no putting it off. It’s like my whole body is simply shutting down. My head stops thinking, my muscles go heavy, and I can barely walk.

I lay down on the sofa at about six pm on Sunday, and only came to properly at about 6am this morning. So that’s 36 hours of basically being unconscious. I know I woke twice when my alarms went off to take my meds, and I know there was a third alarm I ignored so I missed a dose. I know I briefly came to and made a coffee at about 7pm on Monday, and it took everything I had to get into the kitchen and back. The rest is a blur of weird dreams involving a pub fire, going swimming in Italy and a trip to a theatre. Strange but true.

So that’s 36 hours lost so far. When I woke at 6am this morning I knew the worst had passed, the almost coma like feeling had gone, and my mind is awake to some small extent. Enough to slowly write this at least. But I have zero energy, and little concentration. From experience it will take another 24 hours at least before I’m able to actually get up and shower. I won’t be able to read or follow a TV plot properly, and I will probably sleep a lot today, though hopefully more refreshing sleep, not the passed out exhausted-ness of the past two days. Although it’s not an experience I’ve had I imagine I probably feel about the same as a marathon runner the day after, when everything hurts and you can barely move!

This is not a rare occurrence, it happens about once a week. I can lose from one to three days. I do pace my activities quite carefully, plan down days around days I have to be up and out, whether for medical appointments or social. I live alone so I try to get out three times a week for a couple of hours each time, usually a couple of coffees or soft drinks with friends. It’s incredibly easy to become isolated with chronic illness and it’s so very important we don’t.

So today will be a ‘sofa day’, as it happens it’s very rainy and dark outside so a perfect day for a couple of daft movies and snoozing. Then, fingers metaphorically crossed, I’ll feel human again tomorrow 😊

Footnote – it’s curious but common in #chroniclife to feel the need to validate ones symptoms and experiences, especially with something like ME which is incredibly still dismissed by some doctors. In this instance I’m actually glad I was wearing my sleep tracker, which has recorded 23 hours of sleep for yesterday. Proof!

*I have referred to and quoted from the American NIH or National Institute of Health because I find their website carries clear and up to to date articles. The full text that I’ve quoted from can be found here.

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Painsomnia, it can be beaten!

Speak to anyone with chronic illness and they’ll know exactly what painsomnia is.  It’s night after night of not sleeping or very broken sleep, days of odd nap times that can last for hours so you wake up wondering where and who you are!

Unfortunately what this does is break down our sleep routine, leaving us with a mixed up body clock that has no idea of the time and is unable to differentiate between day and night.  I’ve had some of my most awake and alert hours when the rest of the world is asleep.

After about four years of insomnia which then turned into painsomnia I honestly thought I was screwed.  There was no way of putting this right again, this was just the way I roll now. And then I attended a Pain Self Management Programme at my local hospital.  It’s run by a team of physio, nurses and counsellors.  And for the first time they have me an inkling of hope that I could beat this.

They repeated many times “it’s simply down to sleep hygiene”. And I’m gobsmacked this is working, but it is.  So I wanted to share.  I know how many of my online RD friends suffer with poor sleep, and it makes us feel worse in many ways. So, here’s what has worked for me…..

(Just bear in mind these are my tips, and although I’ve pulled from what I’ve learned on the course this is definitely not hospital or medical advice)

1. Set a regular bedtime.  I now get into bed at around 11pm pm each night.  Not to sleep, but to relax.

2. Put down the phone! I don’t allow myself on my phone or tablet after 11pm – it really does keep your brain over stimulated instead of allowing it to wind down.

3. Hide the clock.  Yes  I’m serious 🙂 Turn it away or remove it from the bedroom.  When we can’t sleep we constantly time check, which just gives us another thing to worry about “oh no I’ve only got 4-3-2 hours then the alarm goes off”  Familiar?

4. Ditch the sleeping tablets.  They help you drop off initially, they do not help you sleep. 

5. Ditch caffeine.  I drink decaff tea and coffee, but hadn’t given my diet coke habit a thought! I stopped drinking it two months ago, the difference has been very noticeable.

6. Get comfortable.  Really think about this.  I now have an arrangement of 6 normal pillows, one bolster and one wedge in my bed, but it supports my joints and it’s comfortable!

7. Stop napping in the day time.  Believe me I know how very hard this is.  And on flare days I chuck this out of the window.  But as a rule try and stay awake.  Take regular rest breaks instead of naps.

8. Use relaxation tapes or relaxing music once you’re in bed.  Make sure you’re breathing deeply and evenly.  Watch some relaxing TV if you want – this is about resting and winding down.

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My TV and my stereo in the bedroom both have ‘sleep’ functions, so I can drift off to sleep, and they will turn themselves off, so no being woken by loud adverts or wasting electricity.

I kind of trick my psyche by saying I’m going to bed to relax and get comfortable – you can’t force sleep and trying is the worst thing you can do. 

What it’s really important to remember is that sleep patterns are a learned skill. What’s the first thing we train babies to do? Sleep at regular times.  It’s not something we instinctively know, we had to learn about bed times and waking up times.

So it can be relearned! It takes about two months to establish a regular sleep routine, so don’t expect overnight success.  I’m two months in and it’s already making a difference to how I feel during the day.  The fatigue is just a tiny bit more manageable. At the moment I’m just focusing on sleep times, I’m not worried about regular waking up times – one thing at a time, right?!

Have I been perfect every night? Hell no! But…. I’m carrying on.  A few nights ago I woke up, I had no idea what time it was as the clock was turned away. So I rolled over, got comfortable and used my breathing to relax again.  The night before this had worked and I went back to sleep.  This time no.  So I got up.  It was 4am, I made a cup of decaff, sat and looked at my phone for a while then got back into bed, where I drifted back off to sleep. I still had one completely sleepless night last week, but one is so much better than three or four.  Some nights I still sleep on the sofa, but – I sleep well, so I don’t let it worry me!

For me the biggest thing has been to stop stressing about not sleeping – it’s the most unhelpful thing you can do! And that’s particularly important during flares – I’ll say again these ‘rules’ do not apply during flares, do whatever you normally do to get through!

Interestingly one thing I have realised from being away recently is that actually my bed isn’t very comfortable. It’s too soft for me, which does not help my back. Hopefully I can replace this soon, it could be the final piece of the sleep puzzle 🙂